Fighting Rheumatoid Arthritis With Support: Kelly's Success Story

Kelly was surprised with another baby after she was already a mom to four kids, a few of them teenagers. And when her son was 6 months old, she received a far less pleasant surprise — a rheumatoid arthritis diagnosis.

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If you ask Kelly Young how she's feeling, you’ll hear "I'm fine." That's the polite answer. The real answer is a lot more complicated.

Young, now 45, lives in central Florida with her husband and five children. She received a rheumatoid arthritis diagnosis when she was 40, soon after the birth of her youngest child. These days, physical activity is an impossibility. Her rheumatoid arthritis "is just steadily getting worse despite the
medications," she says. She used to swim, sew her own curtains, do the
painting in her home, and take care of all of her children. Now her children
are at the ready, waiting to take care of her whenever she needs it, which is
often.

Though Young has an aggressive form of rheumatoid arthritis and is in considerable pain, she is fighting back by getting and giving information and encouragement to others living with rheumatoid arthritis through her Web site, RA Warrior. The global connection that she’s made on the Internet keeps her motivated through the difficult days of living with rheumatoid arthritis.

The First Signs

At age 13, Young noticed that she would wake up in the morning with her hands locked up in fists, and she had to pry them open. As the day wore on, her hands seemed fine, and in time this symptom even stopped. But at age 15, her feet started to hurt. At 18, she developed pain in her shoulders — first in one, then in the other, with the pain alternating between them. At 25, after giving birth to her first child, her hip went out as she was walking around.

"It was musical chairs with shoulders and hips and foot pain all the time," she says. The doctors couldn't figure out what was wrong. They suggested that she was exaggerating the pain, even though she clearly explained that she was experiencing joint pain and that her grandfather had rheumatoid arthritis. They ran tests, but found nothing.

"Finally, right at age 40, I had a baby, and that set it off. It was 24/7 and charging like dominos through every joint. At that point it took four to five doctors and four to five months to find the right doctor and start treatment," recounts Young.

The Emotional Toll of Living With Rheumatoid Arthritis

When her doctors finally gave her the rheumatoid arthritis diagnosis, Young was terrified because of how quickly she had lost function in so many of her joints and because the rheumatoid arthritis even affected her breathing — it made her stop breathing on several occasions. She was afraid of everything from the medications she had to take to dying from the disease.

Her family had a similar reaction — they were shocked and afraid. But everyone pitched, whether it was taking off the new baby's socks (tiny socks are hard to pull off with stiff fingers that won't bend) or picking up the baby himself when Young couldn't lift him.

It was a huge adjustment to go from being the person who took care of everyone in the family to being the one who needed taking care of as she struggled to get out of bed and get through the pain each day.

From One Rheumatoid Arthritis Treatment to Another

Young has been on nearly every drug available to treat rheumatoid arthritis — methotrexate, prednisone, adalimumab (Humira), celecoxib (Celebrex), abatacept (Orencia), and etanercept (Enbrel). Nothing is stopping the progression of her disease, but the methotrexate has proven valuable in helping her feel better — she's had to stop taking it a few times because of infections, and there was a noticeable difference in her rheumatoid arthritis symptoms. Now she's trying Actemra (tocilizumab), which was approved by the U.S. Food and Drug Administration in January 2010 and works differently than the biologics she was on in the past.

Young takes omega-3 fatty acid supplements to help protect her heart against damage from rheumatoid arthritis and manage her dry eye. She has tried massage therapy to alleviate pain. When done correctly and the joints are avoided, it has helped some, but Young is still in constant pain. She's never gone into remission and gotten relief from her rheumatoid arthritis symptoms.

Raising RA Awareness

It's frustrating to Young that there's so little awareness about rheumatoid arthritis and so little understanding of what she and everyone else living with rheumatoid arthritis must face.

People with rheumatoid arthritis don't always look sick and may not always act sick. The disease is only predictable in its unpredictability — you never know how it will present from one person to another or even from one day to another in the same person. And the name arthritis seems to paint a picture that isn't representative of the actual disease. It's not just sore joints. It's not just stiff joints. Young likens it to cancer — it's a chronic disease that affects each and every nook and cranny of your body.

Coping Thanks to a Global Network of Support

To bring encouragement and information to those fighting rheumatoid arthritis and to build a network of support with other people who understand what she is going through, Young started her Web site, RA Warrior. The messages she gets from people all across the globe who identify with her and share their own stories of living with rheumatoid arthritis are inspirational, both to her and the site’s many visitors.

"I'm very blessed because what motivates me is how many other people tell me that what I'm doing is helping them," she says. "They help each other and they help me. They send me wonderful stories and that has changed me."

It all comes down to the support Young gets, from her own family to strangers from all over the world who send her notes of encouragement. That support helps her get through even the most debilitating rheumatoid arthritis symptoms.

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